John's Story

My problems all started when I was still at school at about aged 15. I had never had really good health, and was rotten at sports! I started to develop a sore back and then found my left leg becoming a bit numb. I was referred to a number of doctors, and even had spinal manipulation(don't recommend that!) This went on for about 2 years and I finally saw a consultant who told me to go to bed for a month and then come back to see him. On my return to him, I said that I felt no better, to which he replied, "Thought so, you are in my ward tomorrow" A couple of days later I had a mylogram (with oil based dye) and this showed a massive spinal tumor. This was removed in a long operation 2 days later, and I then had a month of Radiotherapy.

It was hard getting back on my feet after all of this. All my friends had gone to Uni, and I was basically flat on my back, and almost re-learning to walk. However, it all improved, and after about 2 years I was able to get back to work. I did a year in a school for handicapped children spending most of my time helping in the pool, which was really good for me.

My loss of feeling was now very much in patches in the lower back and both legs, and has never really improved.

However about 15 years later, I felt my back pain getting much worse, and pestered my own GP for for further investigation. This was done and a simply X Ray proved the presence of Mylodyl in the spinal canal with droplets being seen at the bottom of the spine. At this time the court cases were starting, and I did have a meeting about claiming, but I was in the very difficult position in that the test was the only one that would show up my condition, and if I had not had the op, I would have died.

Further pushing for more information led to a second Mylogram (different dye) but the results were disappointing. The spinal canal was such a mess with scar tissue (the growth was about 27cm long) so nothing could be proved. MRI was not really an option because of the lack of machines (only 2 in the country) and I was just not bad enough.

So I muddled on and about 15 years ago was diagnosed with M.E. This happened after a severe dose of flu, and after months of tests, M.E. was the only thing left. I found better painkillers (Tramadol) and took lots of breaks, working only one day a week till I got my strength back up.

This condition would come and go in cycles, never really getting better. I had appointments in a specialist Pain Clinic, and was given Buprenorphine patches (28mg/h)to start with but was soon on 52.5mg/h. Amiltriptyline was also given, which knocked my out for 16 hours at a time, and I had to quarter a low dose tablet to allow a slow build up. They also gave me a TENS machine which did help.

However, the last 2 years have been getting slowly worse, and my G.P. finally asked if I had ever had an MRI? Bless her, one was fixed for about 2 months later, and I was told the results showed a number of issues, but "nothing really to worry about!" However, seeing the consultant, painted a different picture. She was very honest with me, and showed me the MRI scan in detail, which showed 3 problems. The first was severe disc damage over 3 discs, and the presence of a small nodule in the bottom of the spinal cord. However, she pointed out the severe nerve clumping at the bottom of he spine, explained how that had probably happened, (Mylodyl, + possible bleeding after the operation) and for the first time I heard the word "Arachnoiditis" which she said was severe. I had a further scan 3 months later, which showed no change.

However, the last 9 months have really got difficult. I have been constantly "Stabbed" in the back by what seems like either a cattle prod or red hot poker! This happens without any warning and normally results in a string of bad language! I though it was shingles at first, but no sign of the blisters that I would expect. My right leg was getting weaker, and I can see muscle loss. My Right foot is moving slowly out of shape, with bones now in places they should not be.

Mt last consultant visit was in mid March 2012. She feels that the cause of all of this is either something new pressing on the nerve, or a disc causing major problems, or the Arachnoiditis getting worse. I am to be referred to another consultant re my foot to see if anything can be done there. She arranged for me to get a further MRI on my lower back, but I then visited your site, and found that nearly all of what I had thought was M/E. could be Arachnoiditis. Things like, severe head and neck pain, tiredness, loss of balance, painful muscles, difficulty in walking, and a real problem with short term memory. I wrote back to her that evening asking for a full spine MRI to see if there is any sign of nerve clumping at a higher level, as I can remember being tipped at an sharp angle to allow the dye to flow into the head back in 1971 The full spinal MRI was done last week, and I now await results.

I gather that I am now showing signs of a back of an 80+year old at the age of 57 which does not bear well when I get to 80! I am reluctant to undergo further spinal surgery (and so is the neurosurgeon) unless it can really make a difference.

It has been so good to have found this site and join the group. The help I have received in the short space of time that I have been a member has been something else, and I can't thank you all enough. As so many of you have said, "Once I KNOW what it is, I can start to cope with it." How true.

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